Last weekend I flew out to Tennessee to the wedding of a very close friend. The only thing more beautiful than the service was the bride. I was honored to be invited to a wedding that ran (as far as I could tell) without any major glitches. The only problem? The wedding was outside. Don’t get me wrong, it was a beautiful location and it suited the couple perfectly …… but it was outside without shade. One hour in the sun without shade, as it turned out.

I can’t be the only one with plans that involve the sun. Summer is prime wedding season, plus there are barbeques, picnics, and various other parties. Everything seems to be planned outdoors in the summer. (Especially if you live in the Midwest where summer is short-lived and must be taken advantage of.)

Whatever the event, those of us with lupus need to take special precautions to stay out of the sun. I was very bad this weekend (as far as my lupus and rheumatologist are concerned), but I did my best.

SUNSCREEN. I can’t stress this one enough. Sunscreen is very, very, very, very, very important.

HATS. I’m hoping that they’re going to make a come back following the royal wedding, but even if they don’t … hats are important for sun protection. I have 3 or 4 of them that I wear. I found one with a lace band and flower for the wedding, but you can easily interchange your ribbons. Check out a clothing store for ribbons and lace to help make your hats part of your summer wardrobe!

SHADE. This was not a possibility for me, but if at all possible you should find some shade if you can.

PARASOLS. Some elderly ladies at the wedding had these, and I was j-e-a-l-o-u-s!!!! These need to make a major fashion come back. Even if they don’t, I’d get one if I could find one at a reasonable price.

COVER YOUR SKIN. I packed a cardigan to wear over my dress. I fully intended to wear it – I had it with me at the wedding. Unfortunately, I suspected heat stroke might be an issue if I added any clothing if I wore it. All the same, try to keep your skin covered. Long sleeved, thin, cotton tunics are a great option as you won’t boil in them!

Does anyone have any other great suggestions as far as protecting yourself from the sun?

EDIT:

Things I forgot or were suggested by my wonderful readers:

6. SUNGLASSES. I don’t go anywhere at all without these. Score forgetting to put this on the list up to brain fog.

7. SUNGUARD. Apparently you can wash your clothes with this and it imparts some sunscreen protection. I haven’t tried it yet, but I will go out and look for it soon.

Yesterday I experienced something new. Not the sort of exciting and new event that you would like to cross of your “bucket list.” Oh no, this was the sort of thing that should be on the list of “embarrassing things that you hope will never happen” to you. Ok, maybe I’m being a little melodramatic. After all, there are many worse things that could happen as the embarrassing stories section of any Cosmo magazine will tell you. (Or, more reliably, probably most people.) So why am I so upset about this particular event? Well, I guess because it is caused by an event that I am so happy about.

There is no end to the frustrations of taking prednisone: increased appetite, osteoporosis, weight gain, moon face, etc, etc, etc. What people often don’t talk about, though, is that prednisone withdrawal is no pretty sight either. To finally get off of a prednisone taper is an exciting event – it’s splendid to be free of it’s side effects. Sir Prednisone, though, is hardly the type to just let you shimmy down the side of his holding tower on your hair like Rapunzel’s prince and scamper off into happy oblivion. Oh no, he makes it brutal. The mood swings are ridiculous – I mean, really, who tears up at the end of NCIS when they get the bad guy? It’s almost comic except that it’s so frustrating. Then let’s add in the debilitating fatigue and the horrible joint pain. My favorite withdrawal symptom, though, is the nausea and vomiting.

Which brings me to my embarrassing moment: forceful, projectile vomiting in a restaurant bathroom. I mean the kind of puking where you don’t even manage to kneel in front of the toilet because a slight bend at the waist and suddenly it begins… and then repeats 5-6x in fast succession. Oh and then I performed that whole routine again when I got home. Except that I had to get out of the shower that time – with the shampoo still in my hair. That wasn’t my greatest moment. Just in case anyone missed it, I gave a final midnight show. Of course, at that point it was just acid coming up. Beautiful visual isn’t it? To all the empaths out there … are your noses and throats burning yet?? Hey universe, I would like to never do that again, please. Thanks. Curse you, Sir Prednisone. Can’t you just let us go peacefully?

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them. So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

I’m writing this post at 2:30am, having just returned from a friend’s birthday celebration. I should be sleeping, but I suddenly felt like writing, so here goes… Please forgive me if it’s not one of my more coherent posts..

One of the things that kept coming up in conversations (most of which I overheard rather than participated in) was the phrase “I’m so scared that…” Generally speaking this was followed by a few key phrases. Notably “that I’ll never get a job” or “that I’ll end up an old spinster.” Which instigated in my mind a recall action of all the other “I’m so scared that …” statements I’ve heard over the years. These often included worries about the death of parents. More to the point, it included worries about the speaker’s own health.

We spend all this time worrying about these things. Dreading the idea that the might happen. Worrying about what we are doing that might make those fears a reality…. How many people spend a lot of time considering what we would do if they actually DO come true? I surely didn’t, but here I am.

For those of us with chronic illnesses, one of those major fears has already come true, though. So what now? I guess there are a few options: we can wallow. we can ignore that this was a fear in the first place. or, I guess, we can embrace it. Ok, yes, I know that sounds utterly ridiculous. I mean, who embraces a worst fear come true? Well I’d be lying if I said that I have, or even if I said that I’ve been really trying to. I guess the real question is .. SHOULD I be trying to? Ignoring it doesn’t help me. Neither does pretending this was never something I was scared might happen. Still, I am determined to try to embrace what I can. Make the best of a bad situation, so to speak. Through all the pain and suffering we do learn things. We learn compassion. We learn acceptance. Many of us could probably treat a number of conditions ourselves at this point.

Here’s the real kicker though: this fear of becoming ill doesn’t stop when you are ill. Instead, the fear continues to course through you: you worry your meds aren’t the right ones, you worry about the side effects of those medications, you worry that your diagnosis is incorrect, you worry about all the impact on your life and relationships your illness will have, and most of all you fear the escalation of your illness.

At the end of the day, our situation sucks – no two ways about it. Nevertheless, we can choose to focus on the fear or we can choose not too. We might not be able to control whether or not we have an illness, but we can control how we react to having it.

My last post, “what your doctor couldn’t tell you” was directed towards newly diagnosed patients. In it, I tried to outline some key things – additional “side effects” – about life with a chronic illness that I wish my doctor could have told me about. As I was writing that post, I started thinking about WHY my doctor couldn’t tell me these things. I realize that a lot of it is stuff that you have to experience, but shouldn’t a doctor treating a number of chronic disease patients be aware that many of his/her patients are experiencing those things? I think this comes down to an inherent conceptual question: is my doctor treating ME or is my doctor treating my diagnosis? I guess a question that really plays into that is this: which was my doctor taught to do?

A medical education is largely focused on the obviously important science. This means how the body functions, the pathology of diseases, and how the medications work. Medical knowledge has increased, but the time frame of medical school hasn’t. We just keep cramming more and more information into students in the same amount of time. It stands to reason, then, that other things have been necessarily excluded. As an MPH student, one of my majors was bioethics. I was lucky enough to have an amazing professor – one who also taught the medical school ethics classes. One of his biggest complaints was that the medical students, in his opinion, “just don’t care [about his class], because the material won’t be tested on exams.”

I have asked medical students, and they tell me that they are taught how to communicate with patients. How to empathize (a concept that I will have to table for another post), which questions to ask in order to elicit the most information from their patients and so on. I’ve been told that some schools bring in patients to talk about their experiences – but that many students skip those sessions. I guess you can try to teach these things, but it doesn’t do much good if the students can’t be bothered to care (or just don’t have the time to). This shift in focus is visible outside of the schools too. We have increased the ability of a doctor to work “reasonable” hours (debateable, of course) and to have a private life. Gone are the days of house calls and midnight phone calls at home. Doctor-patient relationships are now restricted to the walls of medical institutions.

So where does this leave the patients? It can be argued that our treatments are better. Well, unless you have lupus like I do, in which case treatments haven’t really changed in a very long time. Still, given that it’s a complicated illness, I’m glad that my doctor understands all the science behind it. The thing is, my illness extends far beyond the symptoms laid out in the medical textbooks. It extends into every aspect of my life. As do the side effects of the prescriptions used to treat it. I fight this illness every day. It can take away a lot of things in my life: my hobbies, my life goals – and my life possibilities, my friends, my time, my energy … I’ll stop listing now, because I have other points to make. I’m sure you get the picture. In fact, my illness takes away much of what fills most people’s lives. This, I’m sure you can imagine, opens up a distinct road towards depression.

So I ask you: how can a doctor ignore these things? How can a medical student be allowed to skip the patient experience lectures? How can doctors be trained in a system that has them so stressed out about the science exams that they can’t bother with the ethics? I’m sure, if you are part of that field, you are wondering why I feel I am qualified to comment on this issue. I suppose I’m not – from an institutional persespective. Still, let me remind you of this: doctors exist in order to treat patients. Patients. Not diseases. It is, after all, a “doctor-patient” not “doctor-disease” relationship.

I know that doctors are pressed for time. I know that they must feel that they need to focus on the most important part of the illness to tell me about. The problem is, what they consider unimportant and not worth discussing is the part of my illness that is forefront in my experience and in my life. The questions about “impact of illness” are supposed to be part of a routine medical history .. and so they are: they are routinely skipped. By neglecting to discuss the impacts my illness has on my life, my doctor is being negligent as far as I’m concerned. My doctor is failing to inform me about the impacts of my disease. Any doctor that has treated me this way has not treated me again.

Here is what I fear to be at the root of this problem: does my doctor even know that these issues are issues? Has my doctor ever really taken the time to find out what life is like for chronic illness sufferers of diseases like lupus?

The medical education system needs to remember it’s roots – and the role of the professionals it is training. We are patients. We are not just a diagnosis for you to publish articles about and discuss at your next grand rounds. We exist outside of your clinics … your hospitals … your exam rooms. Our illnesses exist outside of them too. Why aren’t there exams to find out if students are learning that? Why isn’t there more focus on the humanitarian side of a doctor’s role?

Patients aren’t delusional. We know that the amount of time the doctors on Scrubs or Grey’s Anatomy have to interact with their patients is completely unrealistic. We aren’t asking you to spend you days off discussing our lives with us. We are just asking doctors to remember that their textbooks don’t cover a major aspect of our illnesses. We are asking professors to remember that they shouldn’t limit their explanation of illness X to it’s pathology. The patient life impact of the disease shouldn’t be relegated to the “if there’s time” slides tacked-on at the end of the PowerPoint file. Don’t make it okay for students to ignore the patient-lecture series. Don’t test only the science. How are doctors treat us today may or may not be alterable, but the next generation of doctors is currently in schools. They are still being trained. The science of medicine may have changed, but the reason doctors exist hasn’t. It’s not a question of can regain the doctor-patient relationship. It’s a question of do we want to.

So you’re newly diagnosed with a chronic illness. I’m sorry to hear that..

You’re (probably) relieved to have some sort of diagnosis finally delivered… and (almost certainly) freaking out and scared about what it is and what it means for your life. Chances are, your doctor has sent you home with pamphlets of information, websites to look up, and a pharmacy’s-worth of confusing prescription drugs. They probably warned you what to expect in terms of disease symptoms and medication side effects …

… but there are some “side effects” that your doctor couldn’t tell you about, because they aren’t in the textbooks … these are some things that I wish someone, anyone had told me. This list isn’t intended to scare you, but I’m also not a big fan of sugar-coating. I guess that should be #1 on the list: you learn to deal with more crap that you don’t want to hear than you ever thought possible. And you will survive that. There will be days when you think you’re maxed out, but you will find that you are far stronger than you thought you were.

I started with the lifestyle things because I think it was the hardest stuff for me to deal with. I included some more practical things at the bottom of the list that I think are really helpful too.

“Lucy, you’ve got some ‘splaining to do!” And it will not be as much fun as Lucy makes it seem. It will be incredibly frustrating. Most of your friends and maybe even your family will not understand what you are going through. They wont understand why you have suddenly disappeared from the world – well, their world anyway. They won’t understand why you just can’t get out of bed to see them. Or why you keep cancelling on them. They won’t get why you keep insisting that you’re sick when you look just fine. After awhile a lot of them will give up and slowly wander away. (I’ve written a couple of posts about it, and it seems to be a pretty universal problem in the chronic disease world as far as I can tell. I’ve heard it called “disappearing friend syndrome.”) People find their own ways to cope with this situation. Here are a few that have worked out wonderfully for me:

Try sending people a link to The Spoon Theory, it helps a whole lot (but only if they take the time to read it).

Join the chronic disease community. We are all over Twitter, the blogging world, etc. Check out http://www.chronicbabe.com. I can’t begin to tell you how helpful everyone has been in my life. (Ok, maybe I can.) Obviously we can’t replace those friends, but a few new friends doesn’t hurt. It really helps me to talk to people who are going through the same pain and frustrations. It took me a long time to be willing to do this. I had a hard time identifying myself as a “sick person,” but somewhere along the way I realized that being part of this community doesn’t mean I have to identify myself that way.

Learn when to battle. I used to think every friend was worth fighting for. Maybe they are, but I’m sorry to say I don’t have the energy anymore. You will learn to figure out which friends are neglecting you because they try but don’t understand, and which ones just can’t be bothered. It sounds cliché, but your true friends will stick by you. You will need them. Everyone else, well, [choose your expletive of choice here]…

Guilt. Expectations can be a royal pain. Even in perfect health, living up to all the expectations people have of you – and you have for yourself – is not an easy task. When you have a chronic illness, they might be even harder to attain. There’s a lot of guilt involved. I feel like I’m letting down my friends, my family, and most of all myself. It’s frustrating that you can’t do what you want to do when you want to do it anymore. I don’t have any good advice on this one –I’m working on dealing with it. It’s hard.

Free-time is a questionable commodity. Sometimes you will just sleep and sleep because you have no other choice. You won’t always be able to get everything done that you want to. Of course, sometimes you will get tired of sitting around in bed or your favorite comfy chair … suddenly you will have too much free time on your hands. (Yes. It’s possible. Who knew?) But that doesn’t mean you’ll be able to spend it the way you want to. As such, your hobbies may change. Embrace it.

I hope I haven’t horribly depressed you. It certainly wasn’t my intention, but I really wish someone had told me that these things can happen. I couldn’t figure out why my friends had disappeared. I felt like I was doing something wrong… I didn’t realize that these were common occurrences. I hope this is useful for you. If you have any questions or need someone to talk to, please feel free to contact me. gradstdntwlupus(at)gmail(dot)com or @gradstdntwlupus

Practical considerations:

Buy a weekly pill box. Maybe one that has more than one space per day if you have meds at different times. The one I got at Target has morning & night spaces plus it lets me pop out each day separately which I find incredibly helpful. Also useful: the little, flat pocket-sized pill holders for when you want to just slip in a couple of meds.

Set aside a time each week to fill in all these boxes. You don’t want to be going through all those different medications at each dosage time. It eats up your already limited time, you’re likely to make mistakes, and if you’re very tired it makes it a heck of a lot harder to take your meds.

Make sure you are comfortable in your bed and your room. You will probably be spending a lot of time in it. You’ve probably already experienced this. It tends to get depressing if you’ve got springs digging into your back or your walls are all white, etc. This sounds silly, but I didn’t realize how important decorations and such are until I started spending days at a time in my bed.

Take a good look at your wardrobe. Chances are that you have been prescribed meds that make you gain weight. You might end up gaining and losing weight as your meds change and as your eating habits change to deal with the medication side effects (more hunger vs upset stomach, etc). Slightly stretchy waistbands and looser shirts help you to adapt to those changes so you don’t end up with a closetful of things you can’t wear. Try to buy things in mixing and matching sets, it helps your options a little. It’s tragic, I know.

If you have been diagnosed with rheumatoid arthritis or lupus, chances are you are going to have deal with joint problems. There are a couple other things to take into account: buckles and buttons. Swollen joints in your hands will make buckles and buttons hard to work with. Especially in the mornings when you’re in a rush.

Food. Food can be hard if you aren’t living with someone who can cook for you. Figuring out which foods your stomach likes when your drugs make it unhappy is key. Also, if your condition includes fatigue then you probably won’t have the energy to cook all the time. Try to buy things that are easy to cook. Cut and keep them ready or frozen when you have time. On days that you have more energy you can cook and freeze. Try meal-size containers packed with a more or less complete meal. If someone is cooking for you, they might be willing to make a little extra so you can freeze some.

People with chronic illnesses spend a lot of time in doctor’s offices. Or, to be more accurate, we spend a lot of time in their waiting rooms. We sit there reading ancient issues of People Magazine. (If we’re lucky, that is. More often, we’re stuck idly flipping through a magazine about some weird or obscure topic like moths, wondering why on earth the office would choose to subscribe to THAT magazine given the hundreds of options out there… ) But the magazines are the least of our worries.

I’d guess that almost every one of us has a horror story or two to share about interactions with the staff. They double book appointments then make us wait for hours upon hours. They don’t tell us how much paperwork we have to fill out until we arrive, then say we have to wait now because we missed our appointment time while we were filling it out… and after all that they then proceed lose it. Don’t even get me started on incorrectly billed visits that lead to hours wasted arguing with insurance companies. Getting a copy of your medical record is a royal pain: you have to request a copy on the specific day that the staff member is around, and then come back the next week to collect it. There was a lot of truth to that Seinfeld episode in which Elaine is trying to get a look at her medical record…

Still, how many of us have seen life from the other side of the counter? I’ve worked as the triage greeter in an Emergency Room and, repeatedly, as the person who discusses research studies with you and acquires your consent. Let me tell you something, it isn’t too pretty on the other side either. There are mountains upon mountains of paperwork. Despite your best efforts at an organizational filing system, things somehow end up in the wrong places. Scheduling is a nightmare – people are never available when you need them to be. Most of the staff are overworked and underpaid. In some emergency rooms, they’re stuck behind a bulletproof glass just so that they are safe at work.

We are frustrated people, and I don’t think we’re out of line to be. We deal with an awful lot of pain, endless medications, exhaustion, eating restrictions, and people who don’t understand what we’re going through. We need to take out our frustration on someone, and they often bear the brunt of it because… well, because they’re the contact people… they give us the bad news that we’re number 50 in the queue … or that the paperwork we spent an hour filling out last time has been lost and must be filled out again … that the next available appointment isn’t for another 6 months… and so on. How many times per day do they deliver bad news? More times than I’d like to disappoint people, I’m sure. I think I’d feel terrible. And their frustration shows when they start getting snippy at us.

The thing is though, we spend so much time getting frustrated about their failures that we rarely thank them for the favors they do manage to grant us. I’ve seen them use up their personal text messaging (SMS) allowance to communicate with me because I can’t take calls during class times. I’ve seen them call and argue and shout and plead with scan labs to please, please squeeze in an appointment for me. I found out from the lady running my scan once that the secretary at my doctor’s office had called every day for the past month to see if an appointment had been cancelled in order to get me an earlier one. She never told me that, she just called and informed me “an appointment has opened up” … and let’s not forget when they squeeze us in because, as hard as we tried, we were too sick to make it to our scheduled appointment the week before.

Think about the demands that we make … please be open more hours, please have more staff on hand, please magically fit us in… are they reasonable? Not always. Doctors have lives too – and most of them have their own illnesses, we just don’t know about them. Even if they could hire more doctors and more staff to be open longer, can we really afford for our healthcare costs to go up even further? We want them to upgrade their systems so we can book online like the dentist’s office (or some other clinic) let’s us do, but more efficient systems require money – and appointment slots cancelled in order to train staff. It takes time for those things to be implemented. I agree that they’re fantastic, and I think most clinics intend to implement them – when it’s possible. And as for fitting us in… no doubt we are definitely in need of an appointment ASAP… but it’s easy to forget that the people who are scheduled for that appointment slot we want might have been waiting for months just like we’ve been asked to. We get irritated when someone is squeezed in ahead of us, but forget that we were irritating someone else when they managed to squeeze us in last week. All those patients that are ahead of us on the list might be just as much in need, but it’s easy to forget that. They’re just theoretical. We don’t have names or faces to make them real. Meanwhile we can feel our own pains and want them to just stop already.

A lot of times our frustration IS well placed, but I think it’s only fair to thank them when they help us out. (If we even know that they’ve done that for us). So the next time you’re having a frustrating experience with the staff at your clinic or hospital, remember: they’re only human.

When we talk about passion, we generally talk about being passionate about something. Here’s the thing about a chronic illness though: sometimes being passionate about the things we used to love to do doesn’t cut it. We just don’t have the energy or the physical capacity to do them anymore. Does that mean we aren’t passionate about them? No. It just means we can’t act on that feeling anymore. But it sure feels like I’m not passionate about them anymore.

Eventually, this gets awfully depressing. So we come up with new hobbies that we can handle. Knitting, or reading, or blogging, or whatever it may be. We become passionate about those hobbies too. But I, for one, feel a lingering nostalgia for the old hobbies. I still feel a little lost without them, as if I’m not quite complete. Perhaps this is really just the general feeling of loss I feel for my former life.

What I’ve only just realized though, is that those hobbies aren’t the only thing I’ve developed a passion for. In truth, those of us who are battling chronic illnesses have developed a passion for LIVING, whether we realize it or not. Now I realize that “a passion for living” is a phrase usually used in conjunction with or in place of a “zest for life.” Both of which are generally used in the context of people who are often off exploring…. bubbly, ENERGETIC, adventurer-type people. Which, I think we can all agree, we generally are not.

I contend, however, that we DO have a passion for living that extends beyond that basic definition. After all, in order to get through our day-to-day existence, we must REALLY WANT to do it. It takes an enormous amount of willpower to get there. If we didn’t have a passion for life, we’d stay in our beds. We’d never leave our rooms, let alone our homes. We would never find new hobbies or make friends in the community or learn how to deal with our incapacitations and interact with the world.

Mountain climbers and the like have nothing on us. We may not climb mountains, but it takes just as much energy to climb out of bed. We may not explore uncharted territories, but we explore new ways to be a part of the world we live in. We may not walk around with hiking backpacks, but we do trek around with all our meds (which may weigh just as much)! We give having “a passion for living” a whole new meaning.